Patient and caregiver perspectives of an early integrated systemic sclerosis palliative care clinic: a qualitative study.

ABSTRACT:

Objectives

Individuals with systemic sclerosis (SSc) and their caregivers have unmet palliative care needs, yet the role of palliative medicine in SSc is unclear. In this study we aimed to explore patient and caregiver perspectives of a newly developed early, integrated SSc-specific palliative care clinic.

Methods

All patients and caregivers who attended the SSc Palliative Care Clinic within the first 6 months of its implementation were invited to participate in a semi-structured phone interview. Interviews were audio-recorded, transcribed and analysed using reflexive thematic analysis.

Results

Six patient interviews, three caregiver interviews and three patient-caregiver dyad interviews were performed. The SSc Palliative Care Clinic was valued and accepted by patient

SUBMITTER: Wicks C 

PROVIDER: S-EPMC12448292 | biostudies-literature | 2025

REPOSITORIES: biostudies-literature